Years in Review

I haven’t written an end of the year blog in a few years so this one will actually go back to 2019.  Sometimes it’s hard to separate out Running On Air and my accomplishments since many of the things I do are for Running On Air.  You’ll find a mixture of both in this retrospective, with some plans for 2022 at the end.

2021

Becoming a Charity

I’m going to start with the current year as it was a huge milestone for Running On Air.  We officially became an IRS approved, 501(c)(3) charity in October.  This has been my dream for a while.  I kept hearing from people how hard it was to get approved and how hard the forms were to fill out.

The first step was to have a Board.  Four of us met and approved the various documents like Articles of Incorporation and By-laws.  I filed the paperwork to incorporate with the state of Maryland at the beginning of July.  With Covid, nothing could be done in person anymore.  Expediting applications was no longer a thing, although charging the expediting fee now applied to all applications.  We were a nonprofit (a state designation) within a week or two and filed with the IRS by the end of July.

Again, thanks to Covid, there was no possibility of expediting our IRS application.  Luckily though, in 2014, the IRS came out with a simplified application for those nonprofits that met certain criteria (like making less than $50,000 a year).  We met those qualifications and filed the EZ form.  Not only did it mean filing a MUCH shorter form, but it also meant we only had to wait about three months for a response as opposed to almost a year with the longer form.

We received our IRS 501(c)(3) approval on October 16th

This means we can now accept donations and they are tax deductible (click here if you would like to donate).  We celebrated with a fundraising campaign leading up to Giving Tuesday.  Thanks to the generosity of our Board members, three companies: A-Plus Pest Management, Launch Consulting, and Pixels, and an anonymous donor, we were able to match donations dollar for dollar.  We also “matched” t-shirt purchases and virtual race registrations for our Running On Air virtual race at $25 each.

While our matching goal was $2,500, we had $2,865 matched.  That was based on $1,390 in donations and 59 shirts sold and race registrations.

Virtual Races

Our two annual virtual races did well again this year.  Rare Disease Day, which takes place in February sold out again.  We raised $5779.

We held our first medal contest for the PCD Foundation’s Move 4 A Cure 5-5-5 virtual race.  Hillary Long’s design, which was the chemical symbol for oxygen O2, won.  She designed this medal in honor and memory of her father.  We raised $2,420.

We are proud that we’ve raised a total of $29,909 for The PCD Foundation and $12,737 for the National Organization for Rare Disorders (NORD) over our 6 years of hosting virtual races.

2020

I was asked to speak at the National Institutes of Health (NIH) for their Rare Disease Day event on February 28th.  I was excited to participate in this event and I was a little nervous because of this virus that was starting to show up on the west coast.  I figured if I bought a big bottle of hand sanitizer to have on the Running On Air table and avoided shaking hands as much as possible I should be able to stay safe.  It was a great event.

Our 5th Rare Disease Day virtual race, which is always in February, raised $936.

And then in mid-March the US went on lockdown.

We held our usual Move 4 A Cure 5-5-5 virtual race for the PCD Foundation in October.  We sold out for the first time and within about three weeks.  Our 6th annual event raised $7,384.  The medal was based on a picture painted by a fellow PCDer, Kathy McRight.

2019

Virtual Races

Our Rare Disease Day virtual race in February sold out in a record 26 days.  For the first and only time so far we placed a second order of medals.  We raised $5,143 for the NORD.

The Move 4 A Cure 5-5-5 virtual race medal was based on the design used by Breathe for PCD.  We raised $4,029.

Lung Transplant Evaluation

In April I started the lung transplant evaluation process.  Over about a two-week period I underwent various tests to see if I would be a good candidate.  They ranged for non-invasive scans to a right and left heart catherization. The decision was made that although I would be a good candidate, I was still too healthy.  I would continue to see my transplant doctor every three months to see how things were going. 

I made videos during my transplant testing to help those who might be going through the transplant process.  Each transplant center is different, but many of the tests are the same.  If you would like to view these videos you can click here to go to my YouTube page My PCD Life.

NTMir Meeting and American Thoracic Society (ATS) Conference

In May I went to Dallas to speak at NTMir’s NTM and Bronchiectasis Conference.  I was part of a panel of patient speakers.  It was an honor to be asked to share my journey.  It’s also a great educational experience.  You can hear past conference speakers as well as their monthly lecture series on their YouTube page by clicking here.

I was also helping the PCD Foundation at their table at the ATS Conference.  I was asked to speak at one of the conference sessions on bronchiectasis when one of my PCD friends was unable to be there.

I also had the lucky coincidence of running into a PCD family walking back to my hotel one day.  I enjoyed meeting this family.  They have three adorable girls.  The mom and girls have participated in our virtual races and it was so nice to meet them in person.

Actual Races

Disco 5K – Dallas

While I was in Dallas for the conferences, since I had never done a race in Texas, I did a 5K with then PCD Board member Carey Kaufman. This made Texas my 16th state to race in.

This really was a family run. My sister, who had a double lung transplant in 2014, and her kids walked the race with me.

Baltimore Running Festival

Once again I did the 5K followed by the half marathon. This was a training race for New York.

New York Marathon

From the beginning of the year I started training for the New York Marathon.  I was still haunted by my DNF (did not finish) from 2017.  This year though everything fell into place.  The first sign that it was my year was that I was selected through the lottery.  Since I was registered as a disabled athlete, I was allowed to have someone assist me.  My husband agreed to help me out by carrying the extra batteries for my portable oxygen concentrator.  The batteries weighed about six pounds.

The race went much better than 2017.  My pace was faster, I had great company, I had friends cheering me on and I just generally felt so much better.  I finished in 9:50:46 and was 53,512 out of 53,518 finishers.  If you’d like to read the whole race weekend recap click here.

The Last Three Years More Personally

2019 was one of my best years recently in terms of being in shape (I guess that’s relatively speaking as I was simultaneously being evaluated for a double lung transplant).  I felt strong and I finished a marathon.

I decided to get a port for IV antibiotic infusions at the end of December 2019.  I needed antibiotics again and they were starting to have trouble placing PICC lines.  This was such a great decision.  I really wish I’d done it sooner.

When the pandemic hit my exercising went to nothing.  I joke that I’m like Goldilocks.  There’s only one good day a year I can walk outside.  It’s either too hot or too cold.  While Ed and I did do some walking, I wasn’t keeping up the level of exercise I did when I went to the gym.

2021 continued the same way for the most part.  I did start going back to the gym in April after I was fully vaccinated.  They had every other treadmill closed off and everyone was required to wear a mask.  In May though they removed the mask mandate and opened up all the treadmills, so I stopped going.

In July I started the Brensocatib phase 3 drug trial at Georgetown Hospital.  Brensocatib is supposed to decrease the inflammation in the lungs, which should hopefully reduce exacerbations, or the need for antibiotics and/or hospitalizations.  The study is a double blind study and is a year long.  Participants receive either a placebo, 10mg or 25mg.  Click here to learn more about this trial and to see if there are sites enrolling near you.

In September I started going to pulmonary rehab.  The first day they put me on the treadmill at 1 mph.  I asked if I could go faster and she said “OK” and then set it on 1.2 mph.  I was definitely out of shape, but not that out of shape.  The next visit the nurse said they usually wanted you to complete the same level twice before going up but they would be more flexible with me.

I knew I wasn’t their typical patient and I appreciate their flexibility with me.  I’ve enjoyed going.  I only do 30 minutes of cardio, mostly on the treadmill, but sometime on a bike like machine called the NuStep.  I also lift weights.

I have my good days and my bad days.  I have a lot more tired days then I used to.  I now take the rest of the day off after pulmonary rehab because I’m just to wiped out to work.

I am not on the transplant list yet.  The can, so to speak, keeps getting kicked down the road as I am still considered relatively healthy.  I can feel myself declining though, and in more recent weeks I am needing more supplemental oxygen.  I use 6 liters per minute (lpm) at pulmonary rehab.  In contrast, the most my portable concentrator provided during the NY Marathon was about 1.75 lpm and that was sufficient.  My 6-minute walk test a few days ago while using 6 lpm had my oxygen levels dropping as low as 83%.  I am also wearing my oxygen more during the day when not exerting myself.

Whether this is just a blip since I was on IV antibiotics for the first three weeks of December, or the progression of my lung disease, we’ll see.  I see my transplant doctor on January 5th.

Running On Air Goals for 2022

I always have a big list and never accomplish everything.  This year I will be more realistic given my decline in energy, increased need for supplemental oxygen and still working full-time.

The main goal I want to accomplish at the beginning of this year is writing educational material on supplemental oxygen.  One format for this is through brochures.  I have started working on this and concluded that there is too much information for just one brochure.  I would love to see these available at doctor’s offices and will make them available for shipping to doctors and patients and they will be available online.

I would like to see us post more facts throughout the year about various lung related issues.  We post rare disease facts in February and PCD facts in October.  We started posting oxygen facts in November.  I’d like to see more oxygen facts and include other diseases like COPD and Pulmonary Fibrosis.

We will host our two annual virtual races as usual.  Look for our Rare Disease Day virtual race registration to open in the next day or two.

This year is the 20th anniversary of The PCD Foundation, so we are planning an extra glitzy medal in celebration.  Look for that registration to open around August or September.

Now that we are a 501(c)(3) charity we will be planning some of our own fundraisers to help us with the publishing and mailing of those pamphlets.

While I’d like to say I plan on writing blogs more frequently (although based on no blogs in 2020 and this is the only one this year, even one blog next year puts me ahead of that goal) I don’t want to over promise what I’m capable of.

Wishing everyone a wonderful 2022.

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